Wednesday, November 27, 2024

The struggle by the NIH All of Us team to build a massive ‘Biobank’ of patient data

“This spring, the National Institutes of Health will start recruiting participants for one of the most ambitious medical projects ever envisioned…. If all goes well, experts say, the result will be a trove of health information like nothing the world has seen. The project, called the All of Us Research Program, should provide new insights into who gets sick and why, and how to prevent and treat chronic diseases.”

“The All of Us program joins a wave of similar efforts to construct gigantic “biobanks” by, among others, the Department of Veterans Affairs, a British collaboration and private companies like Geisinger Health Systems and Kaiser Permanente…”

“While supporters say the results will be well worth the money and effort, others have begun to question whether All of Us is just too ambitious, too loaded with cumbersome bureaucracy — and too duplicative of smaller programs that are moving much more quickly…”

“In the three years since the All of Us program was announced, not a single person’s DNA has been sequenced. Instead, project leaders have signed up more than 17,000 volunteers…”

“Dr. George D. Yancopoulos, the president and chief scientific officer of the biotech company Regeneron, said the N.I.H. did not have much to show for three years of planning. Regeneron has been deeply involved in similar public and private efforts, sequencing the DNA of more than 300,000…” Read the full article here.

Source: The Struggle to Build a Massive ‘Biobank’ of Patient Data – By Gina Kolata, March 19, 2018. The New York Times.

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Jackie Gilbert
Jackie Gilbert
Jackie Gilbert is a Content Analyst for FedHealthIT and Author of 'Anything but COVID-19' on the Daily Take Newsletter for G2Xchange Health and FedCiv.

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